A long climb up

May–August 2006

Sadie came home from the hospital weak, thin, on IV fluids, and still vomiting. Fortunately she quickly recovered enough to stop the IV fluids, and her vomiting soon subsided. She started to feel a little bit normal again, especially as her right side started to regain minimal functionality with the help of her physical and occupational therapists.

The first post-treatment MRI

June 27, 2006

Sadie’s first post-treatment MRI on June 27 showed considerable shrinkage in the top right tumor; the tumor in the left hemisphere was holding its own. We’d hoped for a dramatic reduction in both, but were glad just to see there’d been no growth.

Biding time

July–August 2006

Sadie’s second round of treatment according to the PNET protocol should have started in mid-June, but her body hadn’t recovered enough to do so. It took a long time for her platelet counts to get back up to a treatment-acceptable level.

By the time Sadie was able to start the second phase of treatment, her tumor was on the move again.

From the diary

Yesterday was Sadie’s first post-treatment checkup. Her platelet count is very low: 35 (150 is normal). The home-care nurse will draw blood on Thursday, and if it’s still very low, Sadie will get her fourth blood transfusion.

*

Sadie continues to improve. Her platelet counts, though doubled after last week’s transfusion, are still low (in the 60s to a normal of 150); she’ll probably have another one soon. Hopefully this one will be a full-blood transfusion, as she had an unusual and alarming reaction to the platelet-only version.

*

Last Tuesday’s MRI shows two things: the largest tumor area has shrunk; the smeary areas have grown. This is not post-radiation swelling or dead tissue.

Read Sadie’s story

Who was Sadie?

Sadie was our daughter. At 15 she was diagnosed with a very malignant brain tumor. Despite radiation and chemotherapy the tumor continued to grow, and she passed away 13 months later.

Was Sadie her real name?

No. To protect our privacy, we've left out almost all personal information about our family and Sadie's life outside of her cancer.

What kind of tumor did Sadie have?

We aren't sure. Her MRIs suggested glioblastoma multiforme (GBM), but her biopsy was inconclusive. After a second and third opinion, her medical team concluded that she had either GBM or a supratentorial PNET. The biopsy seemed to favor PNET, and that's what they treated her for. Her post-treatment MRIs, and her ultimate outcome, seemed to indicate it was GBM after all.

Update: new research since Sadie's death has defined a "GBM with PNET-like components" variant.

Why this website?

During Sadie's illness we scoured the Internet searching for information about brain tumors, treatments, and, once she was terminal, other people's final days. All the personal stories we found were very comforting to us: not because they offered us hope, but because they helped us understand what Sadie was going through. This site is our way of contributing to others walking this frightening path. We hope Sadie's site helps make the journey a little less lonely.

This website is intended purely as a source of anecdotal information. We are not providing medical or any other kindof advice. We are not responsible for anything that happens to you or your family as a result of reading this website.(There: that should cover our back ends.)